“Life is not a rehearsal, it's a performance”: An ethnographic enquiry into the subjectivities of children and adolescents living with antiretroviral treatment in northeastern Tanzania

Antiretroviral treatment (ART) enables ever more HIV-positive children in sub-Saharan Africa to grow into adulthood. While policy documents recommend that children be fully informed about their health status and actively participate in treatment related decision-making, the implementation of such recommendations is often confined by organizational shortcomings and counterproductive power dynamics within medical institutions. By briefly outlining children's enrolment in HIV treatment in a highly frequented treatment center in northeastern Tanzania, in this article I demonstrate the complexity of HIV disclosure to children and the limitations of their participation in practice. I then turn to the subjective experiences of 13 children and adolescents (9-19 years) living with antiretroviral medicines. The study revealed that especially the younger among them had to maneuver a field of 'informational inconsistency' produced by different actors' contradicting strategies of disclosure and concealment. Furthermore, children and youths constantly had to reconcile a gap between maintaining their sense of 'normalcy' and contrastingly experienced debilitating drug side-effects, social discrimination, and - as far as the adolescents were concerned - uncertainties in relation to sexual relationships. Based on this ethnographic material, the article concludes with several suggestions how to improve the provision of medical services and socio-moral support for HIV-positive children and adolescents.